Tira Cohene - Research Proposal

Tira Cohene
Dynamic Graphics Project
Human Computer Interaction
University of Toronto
Toronto, Ontario, Canada
Email: tcohene [at] dgp [dot] toronto [dot] edu

Ron Baecker, Ph.D.
Faculty of Computer Science &
Knowledge Media Design Institute
University of Toronto

Elsa Marziali, Ph.D.
Faculties of Social Work & Medicine
University of Toronto &
Baycrest Centre for Geriatric Care

Alzheimer’s Disease and memory loss can be tragic on many levels. Memories are essential in defining our experiences, our relationships, and ourselves. Our memories of our youth, our education, and our families are just some of the many experiences that make an individual who he or she is. The loss of these can lead to changes in personality or even a loss of sense of self. Memory loss can disrupt one’s ability to perform everyday tasks. Forgetting names of people, dates of events, items and their locations can have serious consequences. As these capabilities degenerate, so does the individual’s independence. The person must rely on others to help compensate for the forgotten things. As a result, it is not surprising that people diagnosed with Alzheimer’s disease tend to have high levels of depression, grief, fear, and frustration (Kasl-Godley & Gatz, 2000).

This can also inadvertently cause pain to loved ones. Watching a loved one deteriorate in cognitive abilities, forget shared memories, or change in personality can have dramatic effects. Not only is it important to consider the well-being of the individual who is afflicted with the disease, it becomes important to consider the well-being of their loved ones. The caretaker, who’s often a family member, becomes very much affected by the disease as well. In addition to their responsibilities, they must cope with the loss of their family member to the disease. As a result, caregivers frequently suffer from isolation, stress, and depression (Kasl-Godley & Gatz, 2000). Other family members are often affected in similar ways.

Intervention methods can be invaluable for providing support for those who are affected by Alzheimer’s disease. Effective support can enhance the well-being of the individuals’ lives. They can focus on strengthening the memory faculties, providing support for memory capabilities, enhancing one’s life in areas where memory loss has caused strains, or facilitating the responsibilities of the caretakers.

For example, Prof. Elsa Marziali, Schippers Chair of Social Work at the Baycrest Centre for Geriatric Care, has begun research on the effects of personalized video-taped retrospective life histories on individuals with Alzheimer’s (Marziali, 2002). The video intervention serves to diminish problematic behaviours, in part through reinforcing the individual’s positive self-identity. Caregivers and family members collaborate on the filming, editing, and viewing of videos. The film uses visual and auditory stimuli such as themes and props to represent retrospective memories. One of the objectives is to evaluate the individual’s mood and agitated behaviours throughout the duration of the project.

The potential of information and communication technology (ICT) for such support extends the possibilities of video-based interventions. ICT has the benefit of presenting information in a nonlinear, pesonalizeable, and interactive format. Text, still graphics, as well as media rich visualizations such as animation and video can be integrated, based on an individuals reactions and feedback to the media. These benefits can enhance and facilitate the creation, manipulation, and presentation of retrospective life histories.

Objectives
In this project, we propose to extend the research from Marziali to a multimedia platform. These benefits can enhance and facilitate the creation, manipulation, and presentation of retrospective life histories. Similar to the founding research, one of our objectives is to evaluate the individual’s mood and agitated behaviours throughout the duration of the project. In addition to the previous work, we wish to study the nature of the interaction of an individual with Alzheimer's disease with the multimedia biography. We hypothesize that the research project on multimedia biographies will enhance the well-being of the participants, and provide novel understandings on the nature of human-computer interaction for individuals with Alzheimer’s disease.

Methodology
To pursue this development feasibility study, we will begin Phase 1 with observations of participants from a range of the mild, moderate, and severe Alzheimer’s disease populations. Observations will include interactions with families and caregivers, as well as determining the possible content and themes for enhancing the individual's sense of self. The observations will also include a qualitative analysis of individuals who may benefit most from an interactive biography system. Based on this analysis, we will focus the study on two to four specific participants who have the potential capability to interact with the multimedia system. We will collect data from the family members, film content, and edit the (non-interactive) biographies. We will then pilot the biographies by observing each participant while viewing the video. Observations will focus on initial reactions and possible interactions to implement in the interactive multimedia content.

Phase 2 will involve the implementation of the interactive components in the biographies. This will be followed by a longitudinal study. Over several months, the participants will watch the interactive multimedia biographies. The content will be viewed several times per week, and participants will be observed in this activity by researchers once a week. Participant reactions and interactions with the multimedia will be observed weekly, and day-to-day behaviours will also be investigated weekly. The final content can be delivered via CD and the Internet and viewed by patients, caregivers, and families.

Analysis of Results
We will evaluate of the impact of viewing the multimedia family histories on the individuals. In particular, we wish to investigate whether recollecting and reinforcing memories of the individual and family history could have beneficial effects such as bringing a sense of well-being or joy to the entire family, and calming or reducing disruptive behaviour of the individual with Alzheimer’s disease. In addition, we wish to study the nature of the interaction of an individual with Alzheimer's disease with the multimedia biography. For example, what are the limiting factors for an AD individual to be able to interact with the system (e.g. will individuals be able to interact with the system only if AD is in the early or mild stages?). If the individual does interact with the system, can the interaction be correlated to positive stimulation effects? Our project aims to provide interventions accessible to Alzheimer’s families in the present and future, through the collaborative recollection of past histories.

Appendix

Kasl-Godley, J., Gatz, M. (2000). Psychosocial interventions for individuals with dementia: An integration of theory, therapy, and a clinical understanding of dementia. Clinical Psychology Review 20:6, 755-782.

Marziali, E., (2002). Effects of personalized video-taped retrospective life histories on persons with alzheimer’s mood and agitated behaviours. Unpublished report.